Neuro-Inclusive Oncology Care and Empowerment Program

Our program offers support services to people with intellectual and/or developmental disabilities (IDD) who are receiving treatment at Dana-Farber. Some examples of developmental disabilities include (but are not limited to): autism spectrum disorder, blindness (or low vision), cerebral palsy, deafness (or hard of hearing), Down syndrome, epilepsy, fetal alcohol syndrome, fragile X syndrome, intellectual disability, Prader-Willi syndrome, spina bifida, and Williams syndrome.

If you are a Dana-Farber patient with an IDD – or a caregiver to one of our patients – we can offer assistance throughout your treatment journey. Don’t have a formal IDD diagnosis? Connect with us. We can provide support.

About the Program

The Neuro-Inclusive Oncology Care and Empowerment program was developed to help Dana-Farber’s physicians and other providers treat cancer in people who have intellectual and/or developmental disabilities. Patients with IDD and their families/caregivers have reported experiencing delays in their care and often have poorer health outcomes as compared to “neurotypical” patients. Through increased education and advocacy, we hope to address these inequities and improve cancer care for all patients with disabilities.

Our team is made up of experienced, licensed social workers and other professionals from our Adult Social Work Program. Psychosocial oncology focuses on helping patients cope with emotional stress throughout all phases of cancer treatment. This unique psychosocial oncology program provides specialized care to adults with IDD, offers neuro-inclusive training to staff and providers, and promotes system improvements to make treatment as accessible as possible.

Support to launch this program was provided by the C.J.L. Charitable Foundation.

Words We Use When Talking About Disability

The words we use to describe people with disabilities matter. Using a shared language helps to foster better communication and understanding. Here are some common words we use on this page and in practice when working with patients, caregivers, and providers:

• Developmental disability: Refers to conditions that may be physical, mental, or both, and may result from genetics, environmental factors, or other health reasons

• IDD: An acronym that stands for "intellectual and/or developmental disabilities"
• Intellectual disability: A condition that affects areas like learning and planning, as well as skills like problem-solving, communication, and decision-making
• Neurodivergent: A person whose brain works differently from what is considered the “norm” by society
• Neurodiverse: A group of people that includes both neurodivergent and neurotypical people
• Neurodiversity movement: A grassroots effort by people who are neurodivergent that advocates for improvements in how society treats and views neurodivergence
• Neuro-inclusive: Refers to an inclusive environment where neurological differences are acknowledged, celebrated, and accommodated
• Neurotypical: A person whose brain works in the way perceived as the “norm” by society; however, we recognize that “typical” does not mean “better,” and we celebrate each person for who they are

How We Help Oncology Patients with Disabilities

A cancer diagnosis can be stressful for anyone. We understand the unique challenges for someone with a disability who is navigating cancer care. Our compassionate care team will work with you to personalize your treatment plans and appointments to ensure each visit is as accessible and comfortable as possible.

Some ways we do this are by:

• Helping to prepare you for what to expect during appointments and treatments
• Developing strategies and visual aids to reduce any anxiety about visits
• Exploring sensory and/or physical accommodations to our environment
• Providing support through individual counseling sessions
• Cultivating supportive relationships between you, your caregivers, and your care team

After completing a comprehensive assessment of our patient’s psychosocial needs, we can identify and attempt to address any potential barriers to accessing care.

How to Connect with Us

When you register as a patient with Dana-Farber, we want to understand your individual needs right from the start. When scheduling your first appointment, our intake staff will ask questions that help us screen for people who may benefit from support through our program. They can also share details about what to expect during your visit, and you can ask them how to inform us of your personal care needs.

You can also reach out directly to schedule a consultation with our Neuro-Inclusive Oncology Care and Empowerment Program staff by emailing neuro-inclusive@dfci.harvard.edu.

Do you have a disability that doesn’t sound like the ones listed on this webpage? If so, please contact our ADA Coordinator in Disability Services.

We Ask Because We Care

During the intake process, you will be asked if you identify as having a disability or disabilities. You will also be asked if there are specific accommodations that could improve your experience at Dana-Farber. It is always your choice to self-disclose or not about your disability status. Learn more about the types of questions you may be asked during registration.

By completing a comprehensive needs assessment, we are better able to identify any potential barriers to care for a patient with an IDD. For example, we could address sensory sensitivities and create a personalized plan for treatment and ongoing care.

We also continue to consult with our health care professionals on neuro-inclusive practices. Through each of these efforts, we aim to increase access and provide you with the kind of support that works best for you.

What Questions Can I Ask to Prepare for My Visit?

To help you get ready for your visit, below is a list of questions that patients and their caregivers commonly ask.

Questions you might ask your intake coordinator, oncology nurse navigator, or other administrative staff members:

• What is an oncologist?
• Who is in my care team and what are their roles?
• Can I bring a support person to appointments? Do they need to be cleared/approved?
• Can I bring a service dog to my appointment?
• How do I let my provider know what I need in terms of access and accommodations?
• What accommodations are available to support me and my specific needs?
• What if I haven't actually been diagnosed with an IDD but this sounds like me?
• What will support look like if I’m feeling anxious?
• What resources will help me understand all the information I’ll get during my treatments?
• How much should I share about my disability, and who is the best person to talk to about my disability/disabilities?
• How will I get from place to place? Can someone help me navigate the hospital?

Questions you might ask your doctor:

• Have you ever provided care to people with developmental disabilities?
• What can we do if I get uncomfortable during my appointment?
• If I am a nonverbal communicator, how can we communicate with each other? In writing? Through Patient Gateway?

Questions that family members and/or legal guardians might ask our staff:

• How do you collaborate with family members and/or legal guardians to support patients?
• How do you support a patient when their family members and/or legal guardian live out of state? What does communication look like with the family members and/or legal guardian?
• If a patient lives in a group home and a family member or other representative acts as their legal guardian, how do you make sure that all perspectives are considered?

Additional Resources

• Autistic Self Advocacy Network
• Self Advocates Becoming Empowered (SABE)
• DisabilityInfo.org
• Adult Patient and Family Advisory Council

If you are not eligible for this program but would like to learn about our other services, please contact our partners in Disability Services.